Sorry for late reply, I was sure I was going to receive a notice from the forum, but I didn't. I had a tough week and completely forgot to visit the forum. Tryed to contact you via personal messages, but hopeless.
Is sclerotherapy more expensive than surgery in US?
I don't want to frighten you, I only want you to know that the danger is real. I know a girl with AVM (left arm also) to whom surgery did harm. At that time we lived in one and the same city. After having 2 of my fingers cut, my parents decided to stop treatment, while she (her parents) continued treatment (surgery). Then suddenly she had a complication (I don't know what sort of complication) and eventually had her arm amputated till elbow and, which is most horrible, the disease followed up to her shoulder. Later she had her arm fully amputated and only then the disease stopped. Now she has a prosthesis. I know that medicine is developed and financed much better in your country, but I would recommend you to consult thoroughly with best doctors regarding any undesirable consequences.
Just be careful.
It is believed that in the future tissue engineering will be capable of growing up a separate arm out of a cell. And such an arm can replace the arm starving of AVM.
Genetics. As far as I know, hemangioma is not permanent and thus not that serious as AVM. Hemangioma usually disappears after 2 years. There is a so called McKusick’s database of genetic disorders. It contains over 5000 diseases believed to be of genetic origin. The problem is, venous malformations are not studied enough to be sure. Multiple VMs are on the list
But there is still room for uncertainty and doubts. I have consulted genetics and they told me, that they could make a test described in the McKusick’s database, but they would not guarantee the result is true.
Take care and good luck!
Originally Posted by KristieinStMarysGA
I hope you find help with your arm, I know how frustating this can all be. I am going through a bit of a rough patch and have been thinking about giving surgery a shot to see if it can be removed. I know sclerotherapy is best and it does work, but I cannot afford many more treatments and want to see if it can be removed.
I don't know if these are genetic, but I do want to share that my sister had a hemangioma at birth, and now an infant cousin has a hemangioma. It would lead one to think that they may be genetic. Guess will just have to wait and see.